The role of science and advocacy regarding a chronic health condition: The
case of chronic fatigue syndrome.

V. Ottati, R.S. Tindale, J. Edwards, F.B. Bryant, L. Heath, D.C.
O'Connell, Y. Suarez-Balcazar, & E.J. Posavac (Eds.).

Social Psychological Applications to Social Issues: The Social Psychology
of Politics. Vol. 5. (pp. 157-172). New York: Kluwer Academic/Plenum
Publishers.

Jason, L.A., Taylor, R.R., & Richman, J.A. (2002).

This paper explores an illness, chronic fatigue syndrome, that is ambiguous
in nature and has engendered problematic, stigmatizing societal responses
to it. In addition, it offers research strategies to prevent the
stigmatization caused by biases and unexamined assumptions about the nature
and likely etiology of this disorder.

In the area of chronic fatigue syndrome (CFS), key decisions regarding the
name, case definition, epidemiology and treatment were made many years ago
within a sociopolitical context in which CFS was assumed to be a
psychologically-based problem (Friedberg & Jason, 1998). In part, some of
the decisions may have been due to the predominance of female patients with
this illness, whose medical complaints have historically been discredited
by the predominantly male establishment (Richman & Jason, in press;
Richman, Jason, Taylor, & Jahn, 2000).

Many physicians and other professionals have continued to believe that most
individuals with this syndrome have a predominant psychiatric illness. Many
CFS activists have argued that the current name contributes to the
invalidation and stigmatization process.

Due to the controversy surrounding the name, etiology, and diagnosis of
chronic fatigue syndrome, people with the illness frequently face
disbelieving attitudes from their doctors, family and/or friends, and many
experience profound losses in their support systems (Jason et al., 1997).

The focus of the paper is on how those in decision making positions
regarding health issues (e.g., medical personnel, CDC officials, and grant
funders) have impacted the name of the syndrome (and its implications), its
definition, funding, research and treatment.